To medicate or not to medicate: One year on

Just over 12 months ago we took the difficult decision to begin medication with Jude. By then it had already been a two-year long process of discussions and evaluations, and we finally decided to give it a shot.

That was a really difficult period in our lives. Jude was having meltdown after meltdown, lasting hours at a time, sometimes throughout the night. Nobody was sleeping, and life felt as depressing as it could get. We seemed to constantly be seeing various professionals and specialists, trying to find some help for Jude, to make his and in turn our lives better. Nothing worked.

Then, one day the ‘m’ word was brought up. Medication.

How would you react if professionals suggested you should consider medication for your 6-year-old child? Not medication to treat an illness, or cure a disease, medication that is classed as anti-psychotic.

I wanted to cry. I managed to keep it together there and then in that room, but I let it out many times after.

It wasn’t the life I’d imagined for that beautiful baby boy who had come into my world six years before. That beautiful baby boy who arrived 7 weeks early, ended up in intensive care and had seemed to struggle with life ever since.

When a diagnosis of autism arrived at 18 months old it wasn’t a shock. I never really understood what autism was, but it was clear he wasn’t following a typical route of progression.

There were no signs of language, his play was very repetitious and singular, he had no interest in other children, he would never make eye contact, and most of the time it was as if he was in another world.

The next few years were tough. As we stumbled through the unknown, they were filled with sleepless nights, screaming, crying, meltdowns and anxiety. So much so that in our darkest days I questioned Jude’s quality of life. This beautiful little boy was supposed to be having fun, learning about the world, making friends. Instead, he seemed to be living constantly on a knife edge, liable to explode at any second, the reasons unknown.

By the time Jude was 5 the meltdowns began to turn into episodes of self-harming.

I’ve tried many times but I don’t think I can find the words to do justice describing how that feels.

To watch someone that you love so intensely, that your whole purpose in life is to protect and look after, go through so much distress and pain is heartbreaking. To see my little boy jump onto his knees, slam his hands against the radiator, even punch himself in the head, left me feeling helpless. That I was failing him as a father

I couldn’t figure out why he’d do it. Why would anyone choose to do this to themselves?

The longer it went on the more intense and violent it seemed to become.

We tried everything to make his life easier, less stressful. But most of the time the meltdowns seemed to come out of nowhere, so I was left just scratching my head again.

We went for check-ups, blood tests (you can imagine how fun that is) and even stool tests. We tried different diets, supplements, creams, and therapies. There always appeared to be some positive results in the first few weeks, but then it would go right back to normal, and Jude would crank it up a level.

It was during this time that medication was first discussed, and we resisted. I didn’t want Jude to become a strung out zombie child. There had to be another way to make things better.

The next year was a rollercoaster. There were spells of real progress, a massive increase in interaction, but the meltdowns would always re-appear. Some weeks the majority of Jude’s day would be spent crying, screaming, and attempting to hurt himself in one way or the other. It was incredibly tiring, even more so for him. The amount of energy he was using up each day was incredible. Sometimes he’s almost pass out and have a nap it had been that intense.

He would wake up in the middle of the night screaming, attacking himself, or attacking us. I lost count of the number of times we’d take him for a drive at 3 in the morning. It was the only way to calm him down. It was also the only way that the rest of the house, and what felt like the rest of the street could get some sleep too.

Something had to give. Jude was desperately unhappy, and seeing him like that was tearing us all apart.

So, with heavy hearts, we revisited the medication option. We had various appointments with pediatricians and specialists, and eventually Jude was prescribed Risperidone.

We talked it through, over and over with the doctors. What were the risks? What were the possible side effects?

The amount prescribed was so minuscule it seemed crazy that it would actually do anything, but I was still petrified about giving my son medication. That first night I just remember following him around, staring at him, looking for any changes.

That was over a year ago, and since then I’ve had lots of people ask me for advice about medication, and our experience……

So, here goes.

The first few months, it appeared like it was working. There was a gradual improvement in Jude’s anxiety and behaviours. Meltdowns were happening less often, and with less intensity. When they did happen Jude managed to snap out of them quicker than he ever had before.

As the bruises began to heal, the smile stayed on his face for longer. Life became a little easier, being a parent a little more fun.

Jude started to cope better with the outside world, which meant we could do more together. We spent a lot of time outside, walking along the river, or going to the park.

Then, suddenly, after about 6 months of gradual improvement, things took a turn for the worse.

His anxiety levels were off the chart again, he’d become upset by even the slightest of noise. The meltdowns returned, and whilst they were shorter in length, they were even more violent. He also began to turn his frustrations towards me or his mum. He’d done this before, but now there was a real anger in his eyes as if he actually wanted to hurt us. He would alternate between hurting himself, and switching on us, slapping and scratching at any flesh he could reach.

Once more, I was at a loss.

The idea of the medication was to reduce his anxiety, and hopefully allow Jude to cope in social situations. Though it worked initially, suddenly it was even worse.

We went back to the hospital for more assessments, more questions. We considered other options, trying other medications. For a while there it felt like everything had gone dark again, the light of hope was slowly fading.

We decided to give it more time, work hard on making life as stress-free as possible for Jude, and trying to identify and eliminate (as much as possible) the main triggers.

This went on for 2-3 months, and just as we were about to give in and change medication, things suddenly got better again.

Out of nowhere, Jude became more relaxed, less violent, less anxious, less upset.

It coincided with the end of school and the summer holidays, but ever since he’s returned to school this term, the happy times and progression have continued.

So what does this mean in terms of the medication?

Honestly, I’m not really sure.

I couldn’t give a definitive answer as to how much difference it is making. Once things are going ok you start to doubt whether he actually needs it, but you’re also too scared to take him off of it and set him back in any way.

I guess that’s the problem with medication. If it doesn’t work straight away and consistently you’re left wondering what effect it’s actually having.

Jude still has meltdowns, I knew the medication wouldn’t resolve that fully, it’s there mainly to take the edge off his anxiety levels. Has it done this? Yes, and no…..

Is Jude any better around his brother?

No, not really. We still have to keep them apart as much as possible, in fact, it has probably got worse over the last year.

Is Jude less anxious in public places?

Sometimes yes, other times no. Not long after we started the medication I was enjoying hour long walks with him, now I’m lucky to be out more than 5 minutes without having to return home.

Are his meltdowns less intense and less often?

Yes, apart from that blip for a few months, they definitely happen less often, sometimes we can go days without having one. When they do occur Jude seems to be able to regain control more quickly too. The reason we even contemplated medication in the first place was to try and stop these long violent episodes that used to plague his day.

Yet Jude also seems less flexible too.

Whenever he is with me I am not allowed to talk to anyone. If I attempt to talk on the phone he anxiously tries to get it out of my hand. If we pass anyone who dares to say hello to me in the street his breathing starts to increase, an anxious look appears on his face, and a meltdown begins to brew. I have to be alone with him. As soon as there’s people around us and he really struggles with being able to cope.

Has there been any side effects?

One of the things we were told to expect was an increase in appetite. This didn’t really happen, until recently. So is that the medication, is it a growth spurt, who knows. Jude is starting to put on a little bit of weight, meaning it’s something to keep an eye on.

There’s also been no drowsiness! Apart from the first day or two of taking the medication, there’s been no zombie like state that I initially feared.

On top of that Jude has started to sleep better (I know, I’ve said it out loud and cursed it, but really he has). He still needs someone in with him, he still wakes up constantly, but it’s shorter in time. When he does wake up he’s attacking me or himself, which is a plus!

My main hope for Jude taking medication was to try and lessen the number of aggressive meltdowns he experienced on a daily basis. Eliminate the constant red mist that was only ever seconds away was holding him back from enjoying life, from being in the right state of mind to be able to learn, to be able to have fun.

So, for now, I’m pretty happy with the decision we made. There have been no visible side effects, and whilst I can’t be 100% sure the medication is what’s making the difference, overall Jude’s quality of life has definitely improved.

10 comments

I honestly can’t imagine how hard this must be for you. Biggest’s meltdowns are more heatbreak than anger generally at the moment. He just sobs and sobs. Or shrieks in despair. I have no idea if that is likely to change and I read your words with a mixture of awe and fear. You are doing your best for Jude, and that’s the best that he needs. If medication improves the quality of his life even a little then it is a good thing. And you shouldn’t feel guilty even for a moment – though I know it’s not as simple as that, even if you know it is rationally true. I hope the future gets brighter and brighter, and even more progress is made, for beautiful Jude and all of you. xx

James Hunt - November 29, 2016 10:12 am

Thank you Danielle, you’re so right. Anything that reduces those meltdowns is worth it in my eyes. Hopefully next year sees a continuation in our progress x

Hi Ann. Thanks for sharing this. It seems we all have the same internal torture that goes on when trying to make these difficult decisions, decisions we never expected to have to make. I think sometimes we have to put our fears aside and try these things. If they make a difference to our child and there are no real side effects, then it will be so worth it. Each decision is tough, and they don’t seem to get any easier, but we have to make one and go with it otherwise we just torment ourselves even more.

That really is a tough one. I commented on your IG, saying the same thing, only you know what’s best here. But if it’s an improvement, it can’t be wrong, can it?

James Hunt - November 29, 2016 10:02 am

YEs, as long as there’s improvement we’ll keep going with it. Just always that doubt in the back of your mind. Thanks for reading 🙂

Gina00 - November 22, 2016 12:18 am

I can so relate to this. We had to put our son on two different medications around 8 years old and it was such a tough decision. But at that point, he was refusing to leave the house because of his anxiety and he was also having meltdowns and a lot of negative behaviors at school. While trying to find the right combination/dosage, his Dr. actually wanted to put him on Risperidone too (so that would have been THREE) medications….we decided to wait and see. Once we got his dosage right, we saw slow improvements. I totally understand the constant questioning. Our son is 10 now, and he’s doing so much better, that we often question whether he really needs the medication still and how will we know if/when he doesn’t? One of his medications isn’t one we can just stop, so if we did it, it would have to be gradual. And every time we think about trying to taper him off, he seems to have a setback that proves he needs it (anxiety related)….It’s all so hard – I’m glad you have found something that is working for now….hope it continues to, or the day comes when he doesn’t need it. Hugs to you.

James Hunt - November 29, 2016 10:01 am

Hi Gina, thank you for your comment. It’s all about finding what works for our child, and I’m sure it will change over the years to come. I’m glad you seem to have found that right balance right now, long may it continue for you all x

Sounds like it has helped over the past year in some ways. A lot of the changes you describe are what happened anyway with our girl as she grew older, without medication, so I think it’s just going to happen and you can’t medicate ‘in advance’ as an attempt to avoid it. It’s such a difficult decision but obviously one that you have not taken lightly. None of us have a crystal ball, so no-one knows if he would have been worse without the medication, but all you can do is what you think helps at the time, and revisit it at the point you think it’s necessary. To be honest, it’s the same kind of thoughts I have about sending my girl to school every day – she doesn’t like it, and at the point when it is damaging her (or hopefully just before!) then I’d have to make the call to stop doing it… but who can say when that is?! I’m hoping I’ll just know. But in the meantime we have to live with the guilt and get on with our lives x

James Hunt - November 29, 2016 9:59 am

Thank you Steph. Learning to overcome the guilt is so important for our own happiness. None of us can predict the future, so we make decisions that we hope are for the best and are what we feel are right at that time. Here’s hoping for a better 2017 for all of us x

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About Me

Hi, I'm James, and I'm lucky enough to be the dad of the two main characters of this blog, Jude and Tommy. Both of my sons are autistic, and it is our stories that I will be sharing with you. I'll be talking about the good times and the bad, the happy and the sad, all with the hope of improving autism awareness.
So many people know very little about autism, even friends and family don't necessarily understand. Hopefully this blog will help change that, and spread a little awareness along the way.
Apart from being an autism dad I also try and juggle running a business too, so life can be pretty stressful at times.
Let me know what you think in the comments, I'd love to hear from you.